"The Truth Shall Make Ye Fret." — T. Pratchett

Tics, and alphabet soup

I’ve been meaning to write something about this for a few days, but have run out of energy before I could. The past couple of afternoons, I’ve combined releasing trapped mice with taking the dog on long walks–calming, but physically exhausting!

While I’m thinking about it, I just ran cross a post about a book that sounds well worth checking out: Deschooling Society by Ivan Illich. I’ve been interested lately in how institutions affect people. That also reminds me of an old post I ran across: Depression, Learned Helplessness, and Education, which definitely describes some of my experiences.

Getting around to the topic I was intending to write about, I was very interested to find out the term for most of my verbal tics: palilalia. I’ve seen echolalia discussed a lot more, and suspected that most of what I was doing was similar. A number of my relatives also do this, and it’s another thing that wasn’t considered that odd until I started school. I talk to myself a lot aloud, and have mostly stopped worrying about muttering like Gollum in public. The popularity of headsets has helped a lot with that, as does walking around with the dog. 😉

Actually, I suspect that I mostly switched to palilalia because immediate echolalia got such bad reactions when I was a kid; even my parents assumed I was purposely doing it to be annoying. (Which led me to pretend that was the case, sometimes, even though I couldn’t seem to stop it.) I still do some delayed echolalia, not to mention blurting out words while reading; no idea how that one would be classified. I’ve always done this with snatches of music, too, not just words and phrases.*

After I moved in with my now-husband (stressful in itself, especially with a transatlantic move!), I tried very hard indeed to keep a lid on the verbal stuff and other “weird” behavior. Besides leading to about the kind of eruptions you’d expect, I’m sure that helped me get severely stressed out and fall into a bad depressive episode. Turns out, I needn’t have bothered**, but that’s some indication of just how much control I’ve got over this stuff–not to mention the sort of reactions I’d come to expect. Trying to control tics was also part of the misery of formal educational settings, not surprisingly, even when other people weren’t busy projecting strange motives onto involuntary tics. It was no coincidence that I started looking into this stuff now, since recent stress levels have been causing more tics.

A lot of what I’d assumed were verbal stims look more like tics, learning more about it. So do some physical ones. I guess they were never recognized as such because they’re not very complex/spectacular as physical tics go, and easily interpreted as fidgeting or purposely making faces. No doubt that’s one of the factors behind the bizarre preoccupation with my facial expressions shown by some teachers, besides just responding differently to a lot of things, and having hooded eyes while dealing with mostly Euro-American teachers in Radford (“people tell me I look fierce / strange / angry. =/”–hadn’t even occurred to me as an explanation!). Most of the time I’m not paying much attention to what my face is doing, especially when I’m concentrating hard on something, and have been attacked by the Face Police many times for offensively screwing up my face and/or rolling my eyes–with it usually getting worse when I looked at their angry expressions. That kind of stress triggers more tics.

Even knowing several people who have gotten TS diagnoses, I did not recognize them myself as tics. Part of this may well be because things have not changed so much since Georges Gilles de la Tourette described one case: “She was felt to be suffering from overexcitement and mischief, and… she was subjected to reprimand and punishment.” That certainly describes what I experienced in school, better than a century later. Also one of my mom’s cousins, who has complex tics which are hard to mistake for anything else, but ran into a lot of trouble over them thanks to projection. I knew I had trouble controlling this stuff, but again took in the frequent message that I Must Not Be Trying Hard Enough.

I was very interested to run across a rather good Tourette Syndrome FAQ, while looking for more info on palilalia. (The linked section also covers what tics are, and I recommend it.) No wonder I’ve felt like I had Tourette’s after trying to clamp down on the verbal tics for any length of time, so they burst out! It helped me see that I’m dealing with a number of tics–to the point of apparently meeting Tourette’s criteria–and got me thinking about how things fit together.

Especially after I saw section 1.2, “Emotional, Behavioural, and Other Related Problems”. What are the main things covered? OCD and ADD.

I have been formally diagnosed with both. Some of my tics were interpreted as signs of mild OCD by mental health professionals, which still strikes me as bizarre. The two sets of “symptoms” may frequently go together, but that’s really sloppy diagnosis. I guess they were looking at repetition, and getting stressed if you try not to repeat the behavior. I do have some other looping thoughts and behaviors. As the FAQ points out, “One could view the latter as extremely complex tics.”

Besides describing mood shifts and some generally “weird” feelings I have experienced, the FAQ also points out that: “many ADD’ers experience problems in school early in life and it is for this reason that their parents often seek help. The norm seems to be for most Touretters to be diagnosed in childhood or adolescence as having ‘Tourette Syndrome with ADD’. If the physician making the diagnosis is ignorant of TS or is unfamiliar with its milder forms, the diagnosis of Tourette might never be made.”

As a kid, I was assumed to have ADHD from hell –unmedicated, thank goodness, but also ignored by the educational system–but they missed the tics. It was unusual for a girl to get diagnosed with “hyperactivity” in the late ’70s, but I did. (That pediatrician also assured my mom that my clothes really were that scratchy to me, and my sound sensitivity was real.) That “disorder” was starting to come up on their radar then. As you may have noticed, I have some ideas about exactly why these kids “experience problems in school”. From experience, I am just as glad they did miss the tics, so I was not operating under a Tourette’s diagnosis too. It wouldn’t have helped in school, and probably would have meant early medication.

Sterotypy fits in, as another way of viewing a lot of the same things. It sounds pretty sloppy in a “we don’t know why they’re doing this, and are ignoring a lot of obvious interpretations” kind of way, until you get into more complex patterns of behavior. I apparently inherited one particularly sequence/pattern of overload meltdown behavior from my biodad’s side of the family. All the other people I know who have had “John fits” (named after one who continued the episodes full-strength into adulthood)–rarely having seen the unusual sequence performed by anyone else–are clearly also on the autistic spectrum, with general neurological setups that seem very close to mine. There’s at least one kid in each generation who does this when sufficiently stressed and frustrated. My mom had the sense to tell that it looked more like some kind of bizarre seizure than a voluntary temper tantrum, and just let me work it out of my system.

Reading about the “related problems” in the Tourette FAQ, I started thinking about all the people I have known–online and off–with an alphabet soup of diagnoses. Before I found out that being on the autistic spectrum explained a heck of a lot, I picked up a terrible snarl of DSM labels– including ADHD, mild OCD, panic disorder (mostly sensory), psychotic features (for lack of any perspective on sensory issues/some tics: i.e., “I don’t understand your behavior at all, but it looks crazy”), bipolar disorder, and some others that frequently go along in a cluster. It’s hard to find a person who has been formally diagnosed and not picked up at least one other label.

This reminds me of how, before people paid attention to Asperger’s writings in the early ’90s, my best friend got diagnosed with a horrible snarl of learning disabilities, sensory problems, dyspraxia, dysgraphia, etc.: sort of the blind men and elephant approach to describing “high functioning” autism, through a multitude of seen-as-barely-related labels. (Oh yeah, she also picked up a Dependent Personality Disorder label later, basically because she needs support.) In a similar situation, I was just treated as a psychiatric mess, besides as perversely bent on “throwing away my potential”.

Currently dyslexia, dyspraxia, attention deficit disorder, attention deficit hyperactive disorder, obsessive compulsive disorder and Tourette’s syndrome of childhood are considered as being separate disorders. There is now evidence to suggest that, on the basis of comorbidity, they should be downgraded to symptoms that will appear in syndromes of developmental delay. . .
A clear pattern of comorbidity was demonstrated. Whilst not always quantifiable, no patient was found to have one condition in isolation and comorbidity rates were found at incidences of up to 95%, representing an increase on the expected prevalence in a general population of 160-2300%.Conclusion The patterns of comorbidity occurred with such frequency that it would suggest that there could be an argument for the downgrading of these conditions from disorders per se to symptoms and that further investigation might suggest that the patterns of comorbidity may fit the criteria for a developmental delay syndrome.

I would not refer to the umbrella as a “developmental delay syndrome”, but I prefer thinking in terms of neurodiversity. The signs of these “disorders” do seem to fit together as a mix-and-match description of at least one type of basic neurological configuration, though. I’d also throw in ASDs and dyscalculia, at the very least. Shame it keeps getting pathologized, with people trying to control what they don’t understand by slapping on a bunch of medical labels.

The tics, in particular, strike me as an excellent example of the social model of disability. If nobody is making a huge deal out of them–staring and/or trying to get you to stop what you’re doing–they’re unlikely to interfere with your life. The same goes for most of the other “symptoms”; a little understanding and acceptance*** goes a long way.

_________

* Music and language seem pretty tied together in my mind, anyway. I may have to write about my by-now complicated relationship with music, at some point.

** Nigel still occasionally thinks I’m talking to him, and I’ve startled him awake more than once, but he’s understanding about various types of “weird” stuff. The biggest factors, AFAICT? Respect, and not assuming he knows everything about what makes other people tick.

** I refuse to refer to “tolerance” as a goal. That should be the bare minimum attitude if you’re planning to spend time around other humans, or non-human creatures for that matter.

Hmm, now I’m tempted to try really wearing a headset in crowded situations. 🙂 So far I’ve just been taking advantage of how many people do use them, so they’ll just assume I have one too. Usually in stressful crowded situations like public transport, I’m already using mp3 player earbuds, though.